Hi everyone. Saw my neurophysio this morning and had a very basic trial of an FES. It didn’t really work for me and my neuro said it would be near impossible to get funding anyway. I think I was pinning all my hopes on it but like my neuro said I wouldn’t be able to walk any better with it. I did say that it seems when we reach the stage of SPMS everyone backs off because its finally got us. Do I now face the fact that I won’t be able to walk without wheels or do I just accept that it’s finally caught up with me and become a wheelie?
I’ve had 15 fair years so I knew it would catch up with me eventually.
Sorry for the negativity but I feel I just hit a wall. Linda x
OK, FES didn’t work for you ! I understand it’s effectiveness is governed by what actually causes your walking difficulties and how long the issue has been around ? …I therefore wonder if the clinicians at the FES Centre in Warwickshire might be able to help more than your ‘local’ neurophysio, and with far greater experience than local physios (…good as they may be) perhaps they may be able to help more to make FES more effective ?!!
I’d also find it hugely disappointing if an alternative aid could not be identified if appropriate ?
Lord only knows there’s not much on offer to make SPMS a little more bearable, so surely this is an area where something could be done ?
According to my physio it doesn’t work because my main walking problems are caused by a lesion on the cerebellum. The FES can be very helpful to some but unfortunately doesn’t work for all, as is the case with most things MS. I think it works better for people with lesions on the motor cortex of the brain.
I have SPMS too, it is more than a bit of a bugger.
Dom’s suggestion of being assessed by experts in the use of the FES is a good one, your physio may have overlooked something.